MNHQ here: proposed new NICE guidance on treating urinary incontinence and POP in women - looking for your views

[RowanMumsnet]

Hello

The National Institute for Health and Clinical Excellence (NICE) has published new draft guidelines on treating urinary incontinence and pelvic organ prolapse (POP) in women, as well as complications associated with vaginal mesh surgery - and they're looking for your views.

MNHQ is a registered stakeholder in this guideline so if you'd like to share your thoughts on the proposed guidance on this thread, we'll collate the themes and use your comments to compose our organisational response. You can also submit responses as an individual, but NICE encourages people to do it via registered stakeholders wherever possible

You can see more about the proposed guidance here and you can read the draft guideline itself here, but here's our short summing up of the recommendations:

*That there should be a 'national registry of surgery involving mesh insertion to treat urinary incontinence or pelvic organ prolapse in women', and this registry will report annually on the outcomes of these surgeries, including adverse reactions;
*An annual review for women who are using absorbent products as a way of dealing with urinary incontinence, to assess their continence, talk about symptoms and risk factors, discuss alternative treatment strategies and talk about long-term management plans;
*Offer an annual review to every woman using long-term medication to treat urinary incontinence or over-active bladder;
*The use of botulinum toxin to treat some types of OAB;
*A recommendation that women are given more information about the possible risks of sling/mesh surgery, and are told that there is uncertainty about how many women are affected by long-term complications;
*Advise women considering a retropubic mid-urethral mesh sling that these implants are permanent and may not be easily removed;
*Give these women written information on the implant including name, manufacturer, date of insertion, and implanting surgeon’s name and contact details;
*Referral of women with a suspected mesh-related complication to a
urogynaecologist, urologist or colorectal surgeon for specialist assessment;
*Guidelines on assessing women presenting with pelvic organ prolapse;
*Recommendation to consider a 16-week programme of pelvic muscle training and vaginal pessaries for women with symptomatic POP.

Those of you who have some personal or professional expertise/experience in incontinence, POP or mesh surgery might want to read the draft guideline in full; there are detailed recommendations in there regarding how to treat various kinds of prolapse and different kinds of incontinence and which medicines should be prescribed; a detailed protocol for treating women who have complications associated with mesh surgery; and comments on how healthcare teams should be organised. There are also some recommendations for further research.

If you think we've missed anything major from this summary (which is quite possible as we're not experts in this at all) then do please let us know.

Thanks
MNHQ

I think there is conflicting information about the role of pelvic floor rehabilitation particularly postnatally.

Can a women’s health physio actually help reverse a mild to moderate prolapse or does it help a woman manage symptoms and halt the progress of the prolapse? Any of you more experienced in this (@Verbena87, hello!) What are your experiences and views?

I Ask because if the latter is the case, we need to help women go to a specialist physio before any damage happens, ie in early stages of pregnancy or, ideally, as part of physical/ sex education in school.

Hello hystericaluterus!

According to the urogynaecologist my prolapse had improved between his first examination (pre nhs physio) and his second (physio ongoing), but self examination suggests my cervix is still lower than it used to be and I still have a bulging anterior wall, so no, it hasn’t returned my fanny to its prior shape/form, though it has moved in that direction. However, it has made a huge difference to my symptoms to the extent that unless I’ve been for a run without my pessary for support, really overdone it lifting heavy things, or am very sleep deprived (nobody seems to think this correlates with worse symptoms but for me it’s absolutely the case) I don’t really notice my POP. It’s given me back my quality of life and comfort (mostly. Penetrative sex is still a total disappointment but I’m hoping that’s a nerve thing and know they can keep recovering for up to 2 years, so 13 months is only just over halfway). Gynae also says there’s a reasonable chance I’ll see further improvement once I stop breastfeeding as well, so it’s a complicated collection of factors.

Also just to point out that I’ve had decent pelvic floor education - mum talked to us about kegels early on and as a runner I worked hard on my whole core. I also did my pelvic floor exercises daily in pregnancy, and restarted them right after birth. Gynae is confident my symptoms would be much worse if I’d not done this (and was surprised I’d regained my continence relatively quickly given my injuries - he credits this to me persisting with pelvic floor exercises) but just wanted to point out explicitly that a strong pelvic floor pre-birth is not a guarantee against damage. I spent several months post partum feeling like it was my fault and “I should have done more!” despite daily practise; I think it’s important women are honestly informed on this (ie it helps but it’s not magic!) so we don’t get the horrible guilty self-loathing.

I've learned a lot reading this thread! When I had my children we were taught and nagged to do pelvic floor exercises, but it was only on talking to a physio recently that I realised that what we weren't taught was how often they need to be done - that a quick squeeze a couple of times a week while standing in a supermarket queue wasn't enough!

More seriously, I wold like to see a standardised approach to investigating UI, prolapse etc. When I began to suffer from UI, I was referred to a nurse at the surgery who initially offered hormone pessaries (which seemed to help). Subsequently on a return visit (at my request) she diagnosed a slight prolapse and recommended pelvic floor exercises and Tena Lady. there was no suggestion of any follow-up and I've never seen a GP.
I shall certainly be researching some of the other information here - I had no idea that there were Kegel TENS machines, nor had I heard of The Whole Woman approach. Thank you.

missbel good luck. I’d go back again and ask for a referral to a urogynaecologist and either a women’s health physio or your hospital’s specialist continence nurse - both urogynae and continence nurse have really changed my life for the better.